Chapter 36C - Atlas of Limb Prosthetics: Surgical, Prosthetic, and Rehabilitation Principles
Special Considerations: Juvenile Amputees: Sports and Recreation Program Development
Carol J. Page, P.T.
Duane G. Messner, M.D.
Recreation can be
a significant factor in eliminating the web of obstacles restricting the person with a disability. Recreation, once confined to institutions and hospital settings with a resulting emphasis on illness, can now occur anywhere that life can be fully tasted-on a mountain, rafting a river or running the Boston Marathon.
Children with limb deficiencies, whether congenital or acquired, are conscious of being physically different when they interact with their families and peers. This recognition has a significant impact on a child's development of self-perception and self-esteem. Body integrity is threatened. Not only is acceptance of this physical difference a barrier for the child, but often it is a factor that is difficult for the parents to accept. Fear of their child's failure, rejection by peers, and potential injury all contribute to parents' sheltering and/or protecting the child from exposure to seemingly risky or challenging activities. Although parents are well meaning, they may hinder children with limb deficiencies from physically exploring their environment to learn and achieve. Since programs for children with limb deficiencies often take place in a facility that nurtures and shows concern for these children, the parents may be more inclined to "trust" their child to such a program. They perceive such programs as providing "safe" environments that permit them to let go and allow their children to develop in ways they thought were only available to "able-bodied" siblings and peers.
Medical facilities (see Annotated Resource List, no. 1) and supportive organizations are recognizing the needs of children with limb deficiencies by developing rehabilitative programs outside the confines of the facility. These programs have proved to have a significant positive impact on the lives and future of these children. They find lifelong sporting activities to enjoy with family and friends (Fig 36C-1. and Fig 36C-2.), and far greater opportunities become available to them.
Recreational and sporting programs for children with limb deficiencies and other handicapping conditions are designed to promote challenge and achievement within the group. Children are accepted for who they are regardless of disability or illness. As children share similar experiences, common needs, and concerns, they develop a sense of identification within this physically challenged group, and their self-image is enhanced. Their social realm expands, and they develop a camaraderie not often found in their mainstreamed environment. Through controlled and guided group activities, physical challenges are met with success, problems and concerns are shared, and an improved level of physical fitness often results. And although these children may still perceive themselves as being physically limited, they learn to take pride in their physical abilities. These groups provide a unique opportunity to educate and encourage these children to develop strategies to deal with everyday problems and to take appropriate responsibility for their individual needs. Children in these programs return to their environments with renewed and positive energy.
When developing programs for disabled children, there are many factors to consider during the program-planning stages, especially if the program involves sports or recreation. Key elements of program planning include establishing program goals, determining the participant population, selecting appropriate participants, identifying resources available to the program, determining staffing needs and training requirements, considering financial and liability issues, and identifying program needs.
A variety of sporting and recreational programs have been developed for children with limb deficiencies. Successful groups can vary in participant mix, or may be diagnosis-specific groups, e.g., programs for children diagnosed and treated for cancer, including children with resulting amputations (see Annotated Resource List, nos. 2 and 3). This latter group has identifiable needs in dealing with painful procedures, long hospitalizations, and life-threatening disease progress. A diagnosis-specific group also allows interaction with qualified staff who can enhance this process. Groups for children specifically with limb deficiencies help participants deal with their limb loss but do not focus on providing assistance with dealing with the cause of the deficiency. Groups that include children with a variety of physical limitations demonstrate that notwithstanding individual diagnoses, the children share many common concerns and needs (see Annotated Resource List, nos. 4 and 5). Such groups allow a mix of children to develop empathy, understanding, and support for one another through group involvement.
Programs are often developed by specific medical disciplines or organizations according to their patient population needs. Program leaders may choose to limit participation to the facility's immediate population or may include children from other facilities and/or the community. The latter can be of great value but requires more planning, communication, and better documentation regarding each child's background and needs.
Participant Selection and Background Information
Assessing whether or not a child fits within the program guidelines is important in helping to ensure that all participants achieve optimum benefit from program involvement. Individual assessment should include identification of physical ability, level of social functioning, and evaluation of the needs required for participation. Detailed medical background information on each child is essential. These data provide valuable participant information (e.g., the need for medical intervention, recommended adaptive aids, precautions and/or contraindications to be considered, staff/volunteer requirements and training needs, and behavior considerations). Awareness of the impact of the illness and/or the disability on the child and family is also of value. This information helps to determine realistic expectations for the child's participation. Strong parental support also has a significant, positive impact on program success.
Geographic location and existing community resources are key factors in developing recreation and sports programs. For example, winter activities are abundant in the mountainous regions and northern states-both downhill (Fig 36C-3. and Fig 36C-4.) and cross-country skiing are readily available in these areas, whereas the northern plains may be limited to crosscountry skiing. In contrast, southern states, by virtue of their milder climate, can provide activities year-round, including camping, water sports, tennis, and golf (Fig 36C-5.).
Community-based programs have flourished as the needs of disabled populations have gained recognition. Most city recreation programs now include a wide variety of activities for all individuals. Many city-owned botanical gardens have special gardening programs for children and adults with special needs. National and local organizations (see Annotated Resource List, no. 6) have developed resource lists of programs and accessible recreation facilities for disabled persons. Park systerns throughout the country are developing trails for the disabled.
Existing programs and organizations can be great resources for fledgling programs because they can provide information about established teaching techniques, adaptive equipment, and training programs (see Annotated Resource List, nos. 4 and 5). They can give guidance to program leaders and, in addition, may be able to provide the actual source for the sports or recreational activity.
Staffing Needs and Requirements
Dedicated staff members committed to providing "a little bit extra" are extremely important. Often medical staff involvement is over and beyond the normal work hours, and salary may not be included.
In addition, volunteers are essential (Fig 36C-6.). Volunteer qualifications should be determined according to the expertise required. Staff training in a specific activity may be necessary (see Annotated Resource List, nos. 4 and 7). And although there are many similarities in teaching techniques and equipment modifications for each disability, staff must be trained to evaluate the participants for their own unique abilities and needs. For the safety and success of the program, staff must be familiar with and understand the particular needs of each child and identify contraindications, concerns, and medical needs (e.g., lower-limb weight-bearing status, prosthetic needs, skin concerns, medical management needs, general health and physical fitness, and behavior management).
Guidelines and/or job descriptions must be identified in writing, and a signed contract may be advisable. Volunteer health screening, for the betterment of the participant as well as the volunteer, should be considered.
Operational costs are significant for all sports and recreation programs for the handicapped. Some well-established programs may own and operate their own facilities (see Annotated Resource List, nos. 4 and 5). In most cases, programs must contract for services with these or other outside specialty resources. Transportation costs, resource contractual fees, and special equipment used for program activities all contribute to program expenditures. Staff salaries as well as food and lodging may need to be provided. Insurance coverage may need to be purchased. If the program is sponsored by a medical facility, additional liability insurance may need to be obtained to supplement the institutional umbrella. Scholarships for program fees may need to be established for participants with documented financial need. Additional costs may include awards and program souvenirs if not donated by a sponsor.
Financial support for program operation may be obtained through grants, donations, and fund-raising events. Local companies and philanthropic organizations may be sources for financial scholarships for program participation. Participant fees should also be a consideration. Although these fees may not cover program costs completely, they do help to defray expenses. And regardless of the amount of financial aid provided, a payment toward the participation fee has a significant positive impact on participants' and their families' interest and investment in the program.
Some degree of risk is involved in all sports and recreation activities. This risk may be higher in the disabled population since this group may experience increased fatigue and diminished endurance. Disabled children competing with their able-bodied peers may fail to recognize their limitations. Thus, guidance and supervision are essential for the child's safety and successful participation.
Legal advice regarding liability is an important element of program planning. Adequate insurance coverage is necessary. Several considerations may need to be investigated: (1) if sponsored by a medical facility, does participation in a sanctioned activity provide adequate liability coverage for the participating children, staff, and volunteers? (2) Do volunteers need to be accepted into a volunteer association of the sponsoring organization for proper coverage? (3) Are group policies available for purchase from specialty organizations (see Annotated Resource List, no. 7) for camps and recreational activities? (4) Does the outside recreational resource provide adequate liability coverage for the participants and volunteers as well as the facility the program represents? A thorough investigation of this issue must be completed and resolved before the program is initiated. Proof of insurance should be obtained, and the type of coverage it provides should be reviewed on a regular basis and a copy kept with program files.
For liability protection, staff/volunteer training requirements may be specified by the insurance carrier, and health screening of the volunteers may be necessary. Written liability releases from volunteers that acknowledge and waive the program's responsibility for potential risks during program participation may be indicated. In all instances, parents/guardians of participating children must sign appropriate forms to release the program sponsor and volunteer(s) in matters of emergency care, transportation, photographic and media releases, and basic program participation.
Regulations regarding chauffeuring of clients by staff and volunteers are usually established by the insurance carrier of the sponsoring facility or organization. When program-sponsored transportation is considered, these regulations need to be examined carefully. Proof of a chauffeur's license and adequate personal vehicle insurance coverage may be required before a volunteer or staff member may chauffeur any participants. Although contractual services for transportation with a public carrier add considerable cost to the program, they should be considered. Printed documentation of the carrier's proof of insurance should be obtained annually. Additionally, the amount of coverage provided should be within the guidelines established by the quality assurance program of the supporting facility.
Specialized equipment enhances the performance and enjoyment of participation in sports and recreation activities for children with limb deficiencies (Fig 36C-7., Fig 36C-8., and Fig 36C-9.) (see Annotated Resource List, no. 4, 5, and 8). Specialized sports equipment must be proved safe and must be maintained properly. Users, instructors, and volunteers must be adequately instructed in its use. Appropriate safety gear is essential.
In addition, there continue to be dramatic changes in wheelchair design, as well as in prosthetics and orthotics. These changes include the use of lighter-weight materials and more sophisticated components and designs engineered for increased activity levels. Costs often rise dramatically with these changes. It would be ideal for a child to have a wheelchair, prosthesis, or orthosis to use solely for the purpose of engaging in a sports activity. Since children require frequent replacement of these devices for growth, the additional expense of specialized sports equipment is unaffordable for many families. To participate in recreational activities, many children must use their regular appliance(s) (Fig 36C-10.). Since participation in higher-level activities puts increased stress on these devices, adaptation and precaution to preserve the life of the prosthesis, wheelchair, or orthosis are imperative.
Sports and recreation for the juvenile amputee should ideally be an integral part of the total rehabilitation program. Specific guidelines have been formulated to achieve this goal. Utilizing sports as a means of rehabilitation has a definite positive impact on the child and results in a rewarding experience for both the child and the staff of volunteers who are participating in the rehabilitation process.
The authors would like to thank the S. Karger AG, Basel, publishers of Pediatrician, for giving permission to use general information from Page CJ, Pearson J: Creating therapeutic camp and recreation programs for children with chronic illness and disabilities. Pediatrician 1990; 17:297-307.
ANNOTATED RESOURCE LIST
- The Children's Hospital Handicapped Sports Program, 1056 E. 19th Ave., Denver, CO, 80218. Producer of films featuring sports and recreation for children with handicapping conditions.
- Special Love Inc: PO Box 3243, Winchester, VA 22601, (703) 667-3774. A nonprofit organization providing unique experiences for children with cancer and their families.
- Sunshine Kids Foundation: 2902 Ferndale Place, Houston, TX 77019, (713) 524-1264. A nonprofit organization sponsoring special programs for children with cancer.
- National Sports Center (NSCD) for the Disabled: PO Box 36, Winter Park, CO 80482. (303) 726-5514. Internationally known center for recreational and competitive winter and summer activities for the disabled.
- Breckenridge Outdoor Education Center (BOEC): PO Box 697, Breckenridge, CO 80404, (303) 453-6424. A facility known for providing organized outward-bound programs for the disabled.
- Ronald McDonald Children's Charities: National Directory of Children's Cancer Camps, Memorial Hospital, 2300 Children's Plaza, Chicago, IL 60614, (312) 880-4564.
- National Handicapped Sports (NHS): 451 Hungerford Dr., Suite 100, Rockville, MD, 20850, (301) 217-0960. National sports and recreational organization supporting the handicapped with many regional chapters throughout the United States.
- Cheff Center for the Handicapped: Augusta, MI 49012. Well-known North American training center for horseback riding for the handicapped.
- Joswick, et al: Aspects and Answers: A Manual for Therapeutic Horseback Riding Programs. Augusta, Mich, Cheff Center, 1986.
- O'Leary H: Bold Tracks: Skiing for the Disabled. Evergreen, Colo, Winter Park Sports and Learning Center, Cordillera Press Inc, 1988.
- Page C, Pearson J: Creating therapeutic camp and recreation programs for children with chronic illness and disabilities. Pediatrician 1990; 17:297-307.
Chapter 36C - Atlas of Limb Prosthetics: Surgical, Prosthetic, and Rehabilitation Principles